International Bureau for Epilepsyhttps://www.ibe-epilepsy.org
IBE Fri, 13 Sep 2019 15:11:05 +0000en-US
hourly
1 https://wordpress.org/?v=5.2.3https://www.ibe-epilepsy.org/wp-content/uploads/2019/01/IBE-Social-66x66.pngInternational Bureau for Epilepsyhttps://www.ibe-epilepsy.org
3232Epilepsy Africa News – Issue 18https://www.ibe-epilepsy.org/epilepsy-africa-news-issue-18/
Fri, 13 Sep 2019 15:06:41 +0000https://www.ibe-epilepsy.org/?p=103297Chairperson & Editor’s message Welcome to this edition of Epilepsy Africa and very warm greetings to all new readers since our last new regional newsletter went out. It is with excitement that Africa welcomes two new members (Rwanda and Lesotho) to its International Bureau of Epilepsy family. Since the completion of tenure of office for [...]

Welcome to this edition of Epilepsy Africa and very warm greetings to all new readers since our last new regional newsletter went out. It is with excitement that Africa welcomes two new members (Rwanda and Lesotho) to its International Bureau of Epilepsy family. Since the completion of tenure of office for our past President Dr. Jacob Mugumbate, it is with all humbleness that I join a capable team of Epilepsy leaders on the continent as the new Vice President for Africa.

The year is already going by very quickly and our organization is active on many fronts in Africa. It is with joy that engagement with Africa Union was resumed and engagements by our Mauritian Chapter has seen epilepsy being recognized by the African Union as a disability. This, therefore, will enhance our effort of fighting stigma and discrimination together with others disabilities.

Africa was well represented in the General Assembly that took place in Bangkok. Significant issues for persons with epilepsy such as poverty, access to medication, employment and health were covered in the discussion that took place. We continue to advocate for change and have made efforts to engage promptly and effectively within six (6) governments under the Band Supported Advocacy Project. The project will see the targeted countries develop national epilepsy plans.

This Newsletter will be published at a time of significant change in epilepsy as the sector – we are informed after the launch of the Epilepsy Report 2019. Africa looks forward ahead to use the report to ensure inclusion of persons with epilepsy in reducing the burden, fighting stigma, reducing the treatment gap and prevention of epilepsy. There is a high need to ensure that as a region we have a coordinated action to prioritize epilepsy.

As we move forward as a region, we will need to refocus our attention to the needs of persons in the continent and mainly our Chapters in terms of capacity building, resource mobilization, not leaving our youths and women with epilepsy behind. However, change as we know takes time, effort and persistence. I would, therefore, like to acknowledge all those advocates for change that make the IBE family tick at all levels. We should all look forward to playing our part in this process

]]>International Epilepsy News – Issue 2, 2019https://www.ibe-epilepsy.org/international-epilepsy-news-issue-2-2019-2/
Thu, 29 Aug 2019 14:09:54 +0000https://www.ibe-epilepsy.org/?p=103267Since the last issue of International Epilepsy News, it’s been a busy time for IBE. The biggest event was the 33rd International Epilepsy Congress in Bangkok. For IBE, a highlight of the congress was the Golden Light Awards, which was a major success. One of the eight wonderful young people who received an award, Scarlett [...]

]]>Since the last issue of International Epilepsy News, it’s been a busy time for IBE.

The biggest event was the 33rd International Epilepsy Congress in Bangkok. For IBE, a highlight of the congress was the Golden Light Awards, which was a major success. One of the eight wonderful young people who received an award, Scarlett Paige, shares her diary post-Bangkok in this issue.

Also in Bangkok, the Global Epilepsy Report was launched during a lively symposium where enthusiasm for and appreciation of the report was clear to see. The full report and a summary are available to download on the IBE website www.ibe-epilepsy.org.

In Europe, a major issue has been approval by the European Medicines Agency of cannabis projects as an adjunct treatment in two rare epilepsy syndromes and the ePAG group invites you to get involved.

A word of warning on the problems that the use of essential oils can cause is brought to us by Dr Thomas Mathew from India, where such products are very widely used.

Find out about recent initiatives of Epilepsy South Africa and also enjoy reading news from Bolivia, Spain, Australia and Ireland.

]]>The Power of Advocacy – Scarlett Paige reflects on the two months since winning an IBE Golden Light Awardhttps://www.ibe-epilepsy.org/scarlett-paige/
Wed, 21 Aug 2019 11:04:47 +0000https://www.ibe-epilepsy.org/?p=103242On 9th of April 2019 I received an email that would allow me to advocate for epilepsy on an international scale with it I can help epilepsy get the respect it deserves and hopefully people living with it accepted not judged. The email was from Ann Little who is the Executive Director of the International [...]

]]>On 9th of April 2019 I received an email that would allow me to advocate for epilepsy on an international scale with it I can help epilepsy get the respect it deserves and hopefully people living with it accepted not judged.

The email was from Ann Little who is the Executive Director of the International Bureau of Epilepsy, congratulating me on my success of overcoming my own personal journey with epilepsy, as well as the many voluntary hours I have put into helping others right across Australia going along the same at times a very confronting epilepsy journey.

The email stated that for the first time International Bureau of Epilepsy would be acknowledging 8 recipients from each of the their World Regions. These acknowledgements would be named the Golden Light Awards to bring a shining light to those who have turned their epilepsy in to the power of helping others. The awards would be presented in Bangkok at the 33rd international congress along with the receiving our awards we would each give a presentation telling our story.

From the moment the 8 of us met in Bangkok there was an instant connection that we had known each other all our lives we called ourselves the Golden Brothers and Sisters. Little did we know that saying goodbye at the end of the congress would be so hard. We shed many tears, we reflected on the time we had spent together, we spoke about how much we hope to achieve in the time before we all meet again – hopefully in Paris at the next International Congress.

Since I have returned home to Victoria Australia I’ve been involved in many advocacy projects as a result of my award from the IBE, the first of these was a presentation at the Epilepsy Foundation where I spoke to the staff about my personal experiences in Bangkok Graeme who is the CEO showed a short video of a presentation I gave at the IBE’s General Assembly.

A week after this the Epilepsy Foundation asked me to write an article that would feature in their Statewide newsletter, Epilepsy Tasmania also featured my IBE nomination presentation in their latest brainwaves newsletter.

I was then approached by the Community Engagement and Fundraising Manager Maggie and Michael at the Epilepsy Foundation to feature in an epilepsy focus promotional video part of it would be entered into an advocacy public transport involvement program.

I was approached by the Chronic Illness Alliance of Victoria to present at a woman’s launch workshop called Working From our Strength. The program is designed for women of all abilities, talents and skills to find or return to employment.

I was asked to take part in a conference call with Seer, who are a science, technology and engineering team that specialise in products and services that make diagnosis and management of neurological disorders easy, this involvement was for an upcoming epilepsy forecasting awareness campaign. Seer work closely with Professor Mark Cook who is a world-renowned epileptologist and neurologist, and the director of neurology at St Vincent’s Hospital Melbourne.

The ABC Radio National Jacinta Parsons heard about my story and contacted me to take part in a series called Life Matters on unseen illness and chronic illness that will go to air later in September.

The Curriculum Developer and Content Writer at the Epilepsy Foundation was next to get in touch and has asked me to help in the development of the new Epilepsy Smart Workplace Program, telling me my ideas and experiences are important to developing a relevant and effective workplace program.

The final thing I have been involved in during the last 2 months was an Australian Government Department of Social Services research evening. This included 5 others with lifelong chronic illnesses. We reviewed ads that the Government will be using during the Royal Disability Commission.

So all in all I have been non-stop in advocating for not only those touched with epilepsy but the rights of cross the disability spectrum. None of this would have been possible without the support and acknowledgement from the International Bureau of Epilepsy and the Epilepsy Foundation of Victoria.

I’m honoured to be the first Golden Light from the Western Pacific Region.

]]>‘Hear My Story ‘ – communications workshop for young adultshttps://www.ibe-epilepsy.org/hear-my-story-communications-workshop-for-young-adults/
Tue, 23 Jul 2019 16:24:40 +0000https://www.ibe-epilepsy.org/?p=103109In October 2019, the IBE plans to hold the ‘Hear My Story’ workshop for young adults with epilepsy living in Europe. The event will run over a weekend, from Friday 4th to Sunday 6th, and will gather 20 young adults from across Europe who are personally affected by epilepsy. These young adults may [...]

In October 2019, the IBE plans to hold the ‘Hear My Story’ workshop for young adults with epilepsy living in Europe.

The event will run over a weekend, from Friday 4th to Sunday 6th, and will gather 20 young adults from across Europe who are personally affected by epilepsy. These young adults may have a diagnosis of epilepsy or may be impacted by a parent or sibling having epilepsy.

Why?

In Europe, IBE represents 57 associations (our chapters) in 37 countries. There is wide recognition amongst our chapters that young people are currently under-represented in their associations. This poses the risk of undermining the future potential of epilepsy associations or, at worst, putting their very future in jeopardy. It is also felt that the issues facing young people affected by epilepsy are not getting the public or political attention they should. Yet the diverse range of experience and the remarkable personal resilience that a large number of young people with epilepsy already demonstrate is going unnoticed because many feel ill-equpped to report on their achievements.

Those living with epilepsy face a number of additional burdens as young people. At times, they are unable to complete their education to the level they would wish; often they are unable to find a place in the workplace commensurate with their abilities; there is worry that they will not find a partner in life or create the family they might wish for; and regularly stand on the side-lines watching their peers enjoy activities in which they cannot participate. Comorbidity issues are com- mon, with depression and anxiety being the most problematic. These comorbidities increase the epilepsy burden, which is a problem recognised by our chapters in all regions of the world.

Growing to adulthood is a difficult time for most people. For young adults with epilepsy, faced with the added issues that a diagnosis of epilepsy can bring, it can be an even more challenging time. Recognising this and in line with IBE’s goal ‘to provide resources for people with epilepsy and their families to maximise quality of life’, a Young Adult Summit was organised in 2014. Facilitated by the IBE North American Regional Committee, the event gathered 20 young adults from Canada, Jamaica, Puerto Rico and the USA and led to the development of a media project that already has generated compelling videos telling the personal stories of triumph over adversity of young adults with epilepsy.

The success of the project is still evident in the continued active engagement of the young people in the project and in their interest in further developing the group.

How?

Building on the success of the 2014 summit, for 2019 IBE is planning the ‘Hear My Story’ workshop for young adults with epilepsy living in Europe. The event will run over a weekend, from Friday 4th to Sunday 6th October, and will gather 20 young adults from across Europe who are personally affected by epilepsy. These young adults may have a diagnosis of epilepsy or may be impacted by a parent or sibling having epilepsy.

The objectives of event are:

To provide the platform for young people to voice the issues they face and raise awareness of these issues.

To provide young people with epilepsy with the skills to become epilepsy advocates, in partnership with our national chapters in Europe.

To hear how young people with epilepsy perceive patient organisations and how IBE, together with our chapters, can adapt our work to better embrace the views and expectations of these young people with epilepsy.

In Europe, the outcomes of the workshop have the potential to build to a political campaign that could be brought to national policy makers as well as those at EU level.

Globally, we anticipate the outcomes to influence on our theme for and focus of International Epilepsy Day 2020.

The ultimate goal of the initiative is to develop a programme that assists young adults living with epilepsy to become epilepsy advocates. The pan-European initiative will engage young people from across Europe both within and outside the EU region, with the added potential to be replicated at a national level through our chapters and, with the possibility of adaption for use in other IBE regions.

Who?

Each IBE chapter in Europe is invited to nominate a candidate to attend the course.
Participants should be under 30 years of age on 1st January 2019.
The summit will be held in English and participants should have a good working knowledge of English.
First preference will be given to one candidate per chapter. Where there are more than 20 applications for places, the first 20 applicants will be chosen, with the remaining applicants forming a waiting list to fill any vacancies that might arise.

Programme

IBE will organise a workshop for young adults with epilepsy entitled ‘Hear My Story’ with up to 20 young adults from across Europe aged 18 years to 30 years participating in a two-day event. Workshop sessions will explore ways in which the young adults can raise awareness of the issues identified by them as impacting on their ability to reach their full potential and then suggest how the young adults can use modern media avenues to solve them. Sessions will include:

How a story, well told, has the power to influence change

How the young person can become an advocate for change in their community

How to use social media platforms for advocacy

How to advocate at an EU level

How to build and develop an online epilepsy community

Following the workshop, participants will be asked, as a team, to design and implement an advocacy project, such as a blog or online campaign, so that the momentum attained is not lost after the close of the workshop.

WORKSHOP PROGRAMME

DAY ONE

Arrival of delegates. A communal evening dinner in the hotel will offer the opportunity for introductions and to relax before the start of the real work on Day Two.

DAY TWO

Welcome and introductions

Ground rules, introduction to IBE and outline of goals. The workshop goals are:

To provide participants with the platform to discuss the challenges of living with epilepsy and to identify possible solutions/projects, in particular in the digital arena, that might address these issues

To support participants in developing skills to tell their story in a compelling manner to become advocates.

Outline goals – to support participants in developing skills to tell their story in a compelling manner

To identify a digital networking project that could be developed by the group to celebrate International Epilepsy Day 2020.

Discussion

The young adults will have the opportunity to share their opinions about a range of topics and themes related to epilepsy. The discussion will help in identifying a suitable project, to celebrate International Epilepsy Day, to be set up at the end of the summit. Discussion topics might include:
stigma, myths and misconceptions, and public awareness how epilepsy is labelled and the inappropriate labeling disclosure: when to tell and who to tell about your epilepsy access to treatment – timely diagnosis and treatment options
psychosocial impact and co-morbidities (cognition, memory, depression) Wrap up of the day.

DAY THREE

Having selected a digital project to develop for International Epilepsy Day, the participants will work at laying out a plan of action that will see them involved in rolling out the project over a 4-month period.
Plans for the IBE Academy will be introduced to the participants.
Closing remarks will focus on advocacy, becoming lay experts and an introduction to IBE’s planned Academy.

The summit will close at mid-day to allow delegates travel home that evening.

What’s covered – Expenses Policy

IBE will reimburse participants AFTER the event – and not before – on receipt of a completed office Expense Claim Form that is accompanied by original receipts. Photocopies will not be accepted.

IBE will pay up to €250 towards travel costs of each delegate. This is to include flights, parking, bus/train etc. If this amount is exceeded, the delegate (or their organisation) will be asked to cover the balance of costs.

Ground travel costs claimed must be public transport options; IBE will not cover private or taxi costs unless there are no other options available or where the private/taxi costs is equal to or less than the public fare.

IBE requests participants to choose the most economical options when making travel arrangements and will reimburse only economy class travel.

IBE will provide accommodation for each delegate for 2 nights in single occupancy rooms. Additional nights can be booked through IBE (subject to availability) but the cost must be borne by the participant or their organisation.

Catering will be provided throughout the event. Therefore, no additional food/beverages will be covered.

IBE requests delegates to give at least 7 days’ notice of cancellation if they cannot attend. Otherwise, the delegate will be held liable for any cancellation costs incurred.

Notes:

In exceptional circumstances, with prior agreement, the above guidelines may be waived.
IBE reserves the right to reject expense claims that do not comply with the above rules.

Supported by funding from Shire International GmbH and UCB Pharma

]]>Epilepsy Association of Sri Lanka (EASL) – Meet the Chapterhttps://www.ibe-epilepsy.org/epilepsy-association-of-sri-lanka-easl-meet-the-chapter/
Tue, 16 Jul 2019 15:32:42 +0000https://www.ibe-epilepsy.org/?p=103087 Epilepsy Association of Sri Lanka (EASL) is a not-for-profit charity established in 1989 with the aim of striving to improve public awareness of epilepsy and to facilitate medical and social support for patients and families with epilepsy in Sri Lanka. Sri Lanka is a low- to middle-income country in which myths and misconceptions about [...]

Epilepsy Association of Sri Lanka (EASL) is a not-for-profit charity established in 1989 with the aim of striving to improve public awareness of epilepsy and to facilitate medical and social support for patients and families with epilepsy in Sri Lanka.

Sri Lanka is a low- to middle-income country in which myths and misconceptions about epilepsy are rampant among the community. Education, employment, marriage and social functioning are often adversely affected in individuals afflicted with epilepsy due to the social stigma that is prevalent in Sri Lankan society. These reasons often form a barrier that prevents patients from seeking medical attention.

Over the years, EASL has tried to quell the misconceptions and stigma associated with this disorder through various public awareness programmes using different media. Members of EASL (who mainly comprise of medical professionals who treat patients with epilepsy and carers of patients with epilepsy) use print media, electronic media such as television and radio, and social media to reach out to the community and spread awareness of this disease.

Recent examples of such programmes include a national short film festival on epilepsy and an awareness campaign for public health midwives in the Galle district on the South coast of Sri Lanka. The EASL teamed up with two prominent TV stations in the country and renowned local film-makers and used the film competition as a platform to spread awareness of epilepsy among the public.

EASL received over 50 short films from both amateur and professional film-makers from all parts of the island. This was the first time EASL had reached out to people through art and film. What was gratifying to note was that there was a fair share of films in the Tamil language from the North and East of the country; a part of the country that is in the process of reconstruction and rehabilitation after the 30 year civil war, which ended a decade ago.

Epilepsy can affect anyone at any age, in any race or social class and knows no barriers. This theme was evident in the films that were submitted which were of high quality and standard. The winners of this competition were announced at the “Epilepsy Day Programme” on the 11th of February. The EASL is grateful to Mr Kumar Sangakkara a sporting icon in Sri Lanka who was guest of honour for this event. It is hoped that sports stars such as Mr Sangakkara can play a key role in spreading development messages on epilepsy.

It’s well known that health care providers require special knowledge and skills in order to provide competent and safe care as well as to protect those who access the health care system. The public health midwife is an integral part of the public health system in Sri Lanka who is in direct contact with the local community. The midwife is the closest health care person that the community encounters and any person can seek health care information from her. They also tend to understand the social impact of epilepsy on the community. The main objective of the awareness programme directed at public health midwives was to create greater knowledge on epilepsy and its impact on the community and to empower this group of very important healthcare personnel to improve healthcare delivery to patients with epilepsy. On the same theme, EASL has been concentrating on increasing awareness among other stakeholders such as nurses, teachers, social instructors etc.

The EASL membership has been growing over the years and functions as a support group providing both medical and psycho-social support for carers and patients with epilepsy. The EASL also plays an important role in advocacy in epilepsy. The greater involvement of young people in the association has been positive and bodes well for the future of epilepsy care in Sri Lanka.

Contact:

]]>AVANCE (Lebanon) – School and Association for children with epilepsy and special needshttps://www.ibe-epilepsy.org/avance-lebanon-school-and-association-for-children-with-epilepsy-and-special-needs/
Tue, 09 Jul 2019 15:17:06 +0000https://www.ibe-epilepsy.org/?p=103082AVANCE , the school and association for children with epilepsy and special needs was founded in Lebanon in 1997. The association was founded by Arlette Honein. AVANCE is recognised by the Lebanese Ministry of Interior (NGO Decree # 67) and recognised by the Ministry of Education as a specialised school. The Association’s mission is to [...]

]]>AVANCE , the school and association for children with epilepsy and special needs was founded in Lebanon in 1997. The association was founded by Arlette Honein.

AVANCE is recognised by the Lebanese Ministry of Interior (NGO Decree # 67) and recognised by the Ministry of Education as a specialised school.

The Association’s mission is to promote personal development and foster the learning abilities of pupils with epilepsy whose needs exceed the services available in the so-called regular schools with the aim of achieving social, school and / or professional integration.

AVANCE aims to educate and care for children and adolescents with epilepsy. It has two Branches: Beirut and Mountain. There are 486 students registered at the school for the year 2018-2019.

The school aims to re-integrate pupils into a regular school, and adolescents towards socio-professional integration.

Further aims are to help the beneficiary (child or adolescent) gain autonomy to become an active member of society, to reconcile the pupil with the school by promoting his development and the realization of all his intellectual, affective and social potentials, to prepare the student for (re) integration into a regular school or for a vocational or technical apprenticeship, to guide and accompany the families concerned and to promote a child-friendly and tolerant environment (through prevention and awareness-raising).

After more than 22 years of fighting for the cause that is epilepsy, and with more than 2,000 families helped over the years, AVANCE now aims to broaden its horizons and respond to all the needs of people with epilepsy and their families.

AVANCE intends to continue to provide services relating to special education, therapeutic care and professional workshops, but some new services will be offered.

]]>Community Development and Epilepsy Foundation (CODEF)https://www.ibe-epilepsy.org/community-development-and-epilepsy-foundation-codef/
Tue, 02 Jul 2019 10:02:59 +0000https://www.ibe-epilepsy.org/?p=103073Community Development and Epilepsy Foundation (CODEF), in Cameroon, was founded in 2002 by Nsom Kenneth Ninying, - community health nurse, whose relatives have epilepsy. His maternal uncle had five children, three of whom were tragically killed in a fire due to epilepsy. His school guardian had a son called Ephesians who had epilepsy and died [...]

]]>Community Development and Epilepsy Foundation (CODEF), in Cameroon, was founded in 2002 by Nsom Kenneth Ninying, – community health nurse, whose relatives have epilepsy. His maternal uncle had five children, three of whom were tragically killed in a fire due to epilepsy. His school guardian had a son called Ephesians who had epilepsy and died by drowning in a stream. Kenneth has two nieces who each have a child with epilepsy, while his cousin also has a daughter with epilepsy.

On several occasions Kenneth has witnessed negative behaviour perpetrated against persons with epilepsy undergoing seizures. For instance, Kenneth came upon a scene one day where a girl had a seizure inside a car. The driver pulled her out of the car, beat her and abandoned her unconscious on the road. Nobody in the car protested. The driver continued to insult the girl saying “Who is this wizard that wants to bewitch my work for the day?”

After observing such improper treatment and preventable injustices, Kenneth called a meeting for persons with epilepsy, persons living with HIV/AIDS, women/girls, health personnel and sympathisers. This meeting resulted in the formation of CODEF to fight against epilepsy and HIV/AIDS and its social injustices. Its mission is to improve the health, human rights, socio-cultural and economic status of persons with epilepsy in Cameroon.

CODEF’s aims/objectives are to identify, educate and sensitise communities on epilepsy, HIV/AIDS and disabilities (awareness raising) and to carry out home visits. This is to reduce, prevent and combat stigmatisation, social isolation, abandonment and the discrimination of persons with epilepsy, HIV/AIDS and disabilities. Cameroon law No: 2010/002 of 13th April 2010 section 3:3 approves epilepsy as a form of disability.

Additionally, CODEF lobbies and advocates for the rights of persons with epilepsy, HIV/AIDS, disabilities and violence prevention on women/girls. This is to empower these persons on their human rights, and to build their capacities to be advocates and ambassadors their conditions.

CODEF also carries out research on the causes and prevention of epilepsy, supports epilepsy victims and their families (carers) through income generation activities, health education, forming community epilepsy support groups, and mobile epilepsy clinics. This will address low self-esteem, build self-confidence and assist in contributing to the development of their communities.

CODEF networks, collaborates and partners with health institutions, neurologists, general medical practitioners and mental health departments, local and international organisations (NGOs, Trusts, and Foundations etc) on the work of epilepsy and HIV/AIDS.

THE RIGHT OF A STUDENT WITH EPILEPSY TO ATTEND SCHOOL DEFENDED BY CODEF

Michael Che Kpuh’s son had epilepsy and was attending a secondary school in Wum in North West Cameroon. He was stigmatised, socially isolated and discriminated upon by his peers, teachers and the school management. During his seizures he became incontinent. His classmates called him names such as evil spirit, witch and fool. His teachers kept him seated alone on a bench and in one corner of the classroom during school hours. He was demoralised and had low self-esteem.

His epilepsy condition and the issues of incontinence became worse despite taking epilepsy medication. His parents took him back to the hospital but to no avail. School authorities called his father for an administrative council meeting because they had taken a decision to dismiss the boy from school. His father had pleaded that his son should not be dismissed but the school authorities insisted on his son’s dismissal.

The family were confused about what to do. They had spent a lot of money on their son’s treatment since childhood. With his small pension the father could no longer care for their son, his other siblings and provide food.

When his parents learned of CODEF out-reach activities in Wum District hospital in 2015, from the American Peace Corps Volunteers working with CODEF and other projects in Wum; they decided to meet CODEF to present their family ordeal.

CODEF immediately intervened by visiting the school authorities and held several meetings with the school management, stressing that it is the right of a child to receive schooling and be educated despite health conditions. The school management gave his parents and CODEF one condition – in order for them not to dismiss his son; the parents would have to provide him with sanitary protection.

In addition, in collaboration with the hospital doctors, CODEF increased his medication to a higher dose and followed-up on his compliance. To everyone’s amazement, this led to a huge improvement and an end to his incontinence.

Today the young man has been appointed a flag boy at the school school – by the same school authorities that were to dismiss him! His duty is to hoist the school flag every morning during assembly and to bring it down in the afternoon when the school is closing.

The father has decided to champion epilepsy by educating his community in the markets or at bus stops, at the Village Development Associations (VDAs) and other social groups.

MOBILE EPILEPSY CLINICS

CODEF’s mobile epilepsy clinics are out-reach epilepsy activities where groups of people with epilepsy visit health institutions each week to collect anti-epileptic drugs. CODEF created a mobile epilepsy clinic in Wum District Hospital in Menchum Division which where the group was meeting once a month. Hospital management offered CODEF a free room for use during the clinics. When people with epilepsy attend the clinic CODEF staff carry out epilepsy health education, raising awareness of the importance of taking anti-seizure medications as prescribed – taking them at the right time and in the right dose.

Seventy (70) people with epilepsy attend the clinic where follow-ups are conducted to ensure compliance and avoid anti-epileptic drug resistance. Seizure frequencies of persons with epilepsy were charted for two years (2015 -2017). The results showed that most of the people with epilepsy had experienced low seizure frequencies. Persons with epilepsy that had ten seizures each month showed decreased frequency. The anti-epileptic drugs that were used to monitor and follow-up the seizure frequencies were Phenobarbital 100mg and Carbamazepine 200mg. Lessons learned were that seizure frequencies dropped, patients became physical healthy or strong, did not fall so often and engaged in many more daily activities.

]]>The Croatian Association for Epilepsy – Meet the Chapterhttps://www.ibe-epilepsy.org/the-croatian-association-for-epilepsy-meet-the-chapter/
Tue, 25 Jun 2019 11:52:15 +0000https://www.ibe-epilepsy.org/?p=103067The Croatian Association for Epilepsy was established in 1998 with the aim of promoting, developing and improving the quality of life of all persons with epilepsy, as well as their families, and enabling a better understanding of the nature of epilepsy and the needs of people affected by it. The group’s activities include monthly meetings (lectures [...]

The Croatian Association for Epilepsy was established in 1998 with the aim of promoting, developing and improving the quality of life of all persons with epilepsy, as well as their families, and enabling a better understanding of the nature of epilepsy and the needs of people affected by it.

The group’s activities include monthly meetings (lectures givend by doctors or self-help groups), counselling (via email, phone or in person), organisation and celebration of International/ Croatian National Epilepsy Day and Purple Day, preparing and publishing booklets and educational materials (including First aid for epilepsy, Women and epilepsy, Living with epilepsy and Epilepsy in children), collaboration with other professional associations and societies, organisation of conferences and appearances in media.

The Croatian Association for Epilepsy is especially proud of founding our educational and recreational camps for children with epilepsy (now held 7 times), where children with epilepsy have the opportunity to improve their knowledge of the condition and lifestyle issues such as socialising, employment, and driving. The children are encouraged to reach their full potential in life and to feel equal to their peers in every aspect.

This year we have arranged special workshops for kindergarten educators and staff, giving them an opportunity to learn about febrile convulsions. The response has been great, with all workshops busy so far!

]]>Australians living with epilepsy have access to a new helpline!https://www.ibe-epilepsy.org/australians-living-with-epilepsy-have-access-to-a-new-helpline/
Thu, 20 Jun 2019 15:32:15 +0000https://www.ibe-epilepsy.org/?p=103060An Australian-first telephone and email service to support people living with epilepsy and their families has been launched today by Epilepsy Action Australia, the country's longest serving provider of education and support services to people with epilepsy. The Epilepsy Nurse Line, which is available from 9am to 5pm seven days a week in all Australian [...]

An Australian-first telephone and email service to support people living with epilepsy and their families has been launched today by Epilepsy Action Australia, the country’s longest serving provider of education and support services to people with epilepsy.

The Epilepsy Nurse Line, which is available from 9am to 5pm seven days a week in all Australian states and territories, has been funded by the Australian Government Department of Health, addressing a condition that the World Health Organisation (WHO) refers to as ‘neglected’. WHO also declared that addressing the quality of life of people affected by epilepsy is a public health priority.

Carol Ireland, CEO of Epilepsy Action Australia, said, “The Epilepsy Nurse Line has been developed specifically to improve health outcomes for people affected by epilepsy. Each call will be answered by a Registered Nurse with special training in epilepsy management, so callers can trust that the information they receive will be accurate and safe.”

Minister for Health, Greg Hunt said, “People living with epilepsy in Australia now have a trusted and responsive resource they can count on for all kinds of information related to their condition.

“The Epilepsy Nurse Line will greatly reduce the amount of time it would otherwise take for a person with epilepsy to receive trustworthy advice from a qualified allied health professional, and the Morrison Government is proud to have provided funding for such a valuable service.”

The Epilepsy Nurse Line, which includes both a telephone and email service, will be especially life-changing for people living in rural and remote regions of Australia, who may have limited access to medical professionals trained in epilepsy management.

“There are around 250,000 people diagnosed with epilepsy in Australia and many of them only see their epilepsy specialist once or twice a year,” Ms Ireland said.

“The Epilepsy Nurse Line will mean that a person who has a question about their medication can get an almost instant response, or a person concerned about a family member who has had a seizure can get immediate advice as to what to do next.”

Calls to the Epilepsy Nurse Line will be answered immediately by a Registered Nurse trained in epilepsy management and emails will be answered within 24 hours.

The nurses on the helpline are qualified to answer questions about medications, lifestyle implications of epilepsy such as drinking alcohol, driving, playing sport or pregnancy, planning for the NDIS, employment, first aid, seizure management and more.

They can also refer callers on to external services or more specialist Epilepsy nurses and consultants, if the nature of the call warrants further assistance.

]]>Global Report – Epilepsy: a public health imperativehttps://www.ibe-epilepsy.org/global-report-epilepsy-a-public-health-imperative/
Thu, 20 Jun 2019 15:05:14 +0000https://www.ibe-epilepsy.org/?p=103049Epilepsy is a brain disease characterized by abnormal electrical activity causing seizures or unusual behaviour, sensations and sometimes loss of awareness. It carries neurological, cognitive, psychological and social consequences and accounts for a significant proportion of the world’s burden of disease. Despite availability of effective and low-cost anti-seizure medicines, more than 75% of people with [...]

Epilepsy is a brain disease characterized by abnormal electrical activity causing seizures or unusual behaviour, sensations and sometimes loss of awareness. It carries neurological, cognitive, psychological and social consequences and accounts for a significant proportion of the world’s burden of disease.

Despite availability of effective and low-cost anti-seizure medicines, more than 75% of people with epilepsy in low-income countries do not have access to treatment.

This report is the product of a long-standing collaboration between WHO and leading nongovernmental organizations working in the area of epilepsy, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Together we have made substantial progress in encouraging countries to prioritize epilepsy in public health agendas.

Epilepsy: a public health imperative presents a comprehensive picture of the impact that the condition has on people with epilepsy, their families, communities and societies. Epilepsy has a high risk of disability, psychiatric comorbidity, social isolation and premature death. Across the world, people with epilepsy and their families suffer from stigma and discrimination. Many children with epilepsy do not go to school; adults are denied work, the right to drive or marriage. The human rights violations faced by people with epilepsy around the world are unacceptable.

It is time to highlight epilepsy as a public health imperative, to strongly encourage investment in reducing its burden, and to advocate for actions to address gaps in epilepsy knowledge, care and research.

Raising epilepsy on the global public health agenda cannot be done alone. The adoption of the World Health Assembly resolution on epilepsy by Member States drew attention to the need for coordinated action at country level. The resolution provides a powerful tool to engage governments and civil society in taking concrete action to promote access to care and to protect the rights of people with epilepsy.

Epilepsy: a public health imperative is a call for sustained and coordinated action to ensure that every person with epilepsy has access to the care and treatment they need, and the opportunity to live free from stigma and discrimination in all parts of the world.